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31.5.13

Well a few weeks a go my Big Sister Candy got offered a spa day and photo experience for free with a local spa . Obviously Candy wasn't going to turn it down and because it was for two she invited me to join her and I clearly wasn't going to say no :D. We got given a full body massage thing that you lie on a bed and it sends heat and vibrations through your body, I couldn't do it because of my health issue (we aren't allowed things that increase circulation and increase heart rate) but it was hilarious watching Candice do it LOL. We were also offered a plate thing, you know those things where you stand on a vibrating plate and it basically joggles all your fat away I declined because it's something that wouldn't have been good for me but Candice said she's would do it on another day :). We also had the opportunity to have a fish pedicure which we decided to save for another day because my chest and breathing was becoming quite bad but they were so accommodating and really understood, wonderful customer service and I never say that about anywhere LOL.

We got our nails done a Gel Shellac I had a really pretty burgundy sparkly red and my nails are finally even! As much as I try myself I can never get my nails right by myself so I was very chuffed when I saw that they looked great! Then we had our hair and make-up done which was really nice and pretty. My make-up was done so I had a smokey eye and just like a glowy complexion which I was more than happy with because lets just say when I went in there I looked horrid this morning, but I figured they were going to beautify me so I didn't have to do very much :P.

We had 207 photos taken and I'm not going to show you them all but thought I might show you a few of my favourites, and if any of you guys have something similar near you I totally recommend you doing it because it's a really worthwhile thing to do even if you don't buy any of the photos. Me and my sister are going to go back and I will be getting a facial while my sister gets her teeth whitened (which FYI is the only think she would talk about, she's always wanted to get her teeth professionally whitened LOL). I'm so pleased I'm going to get a proper facial because as much as I wash my face daily and take my make-up off everyday my face has decided it wants to rebel against me so a bit of intensive therapy is certainly needed. We will then get our fish pedicures while we are there :).

Hope you enjoyed this post, I had a great day and definitely think some of the photos that were taken were awesome! I'm sure we'll be going back with my twin sister (who couldn't come today because she was working) so expect a similar post in the future :D.

30.5.13

So up above we have the 'cake' I made today. It's actually Nigella's ice-cream cake and seriously it is the easiest thing ever to make and you can make it to your preference as well. Mine has honey roasted peanuts, milk chocolate chips, crunchie and bourbons in. It sounds like a lot but it really is an amazing combination of flavours. It is an insanely sweet dessert so the peanuts really are a must for me because that bit of saltness just cuts into that a bit.

It's a throw it all together and that's it thing and my mum who doesn't really like too much in ice-cream Really liked it. I think the ice-cream by itself would be enough but if you want to add a bit of extra yumminess to it like I did I made the Butterscotch sauce to go with it which tasted amazing because it was all warm and SOOOO Yummy.

I like to make things that are easy but still good. This is far from boring either like my mum said there was a different taste/texture every-time you had a mouthful. This maybe isn't the best idea if you're counting the calories as there's a lot of sugar, chocolate and cream in it. But if you are having a indulge yourself day I really think this is something worth making and although when I made it I thought there wasn't enough to feed the 8-10 people it recommends I can certainly understand why it can because I had a tough time finishing the slice in the picture because it is so rich and filling.

Anyway I just wanted to share with you my little creation today and totally recommend people making it, it takes like 10 minutes to prepare and then all you have to do is chuck it in the freezer and forget about it till dessert time :D.

28.5.13

Last Monday evening when I got my false alarm I was actually in the process of writing a blog because I felt like we hadn't really spoken in a while. Well we had in the sense that I had made sure to update you on the medical side of my life but my actual real life, if you will, I hadn't said much about so I wanted to just do a nice catch-up blog for you :).

So The reason I've been a bit absent lately other than the medically stuff is because I've been bogged up with uni work. I do still have one more essay to do before I have a break till October but I've got a bit of time so whilst I have this time I wanted to spend some time on here. Also I don't really have the longest attention span in the world I tend to refer to myself as a the queen of procrastination, I find any and all excuses not to do any work, but I've been the same for as long as I can remember LOL.

My best friend ran away to Australia this month as well. When I say ran away she didn't 'run' away she moved there with her boyfriend but that was really sad for me because we've been best friends for nearly 12 years (we obviously still will be) but it's just sad because until I get my transplant I can't go visit her. She's going to try and come back annually and when my sister gets married and there's obviously still Skype and Facetime and all that type of stuff but it's not same is it?

Me, Megan and Gina at Gina's goodbye BBQ

Before I got my call last Monday, the day before we got a lovely visit from some family members on the Sunday which was really lovely because we never really get a chance to see them too often. They got to see Spencer my little nephew who was born back on new years eve and see Jaydon too as it's a been about a year since we last saw them. It's really good to just to chill out and talk in a pub with some yummy food. I felt really bad as well because it took them something like 4 hours to get to us because the roads were awful and a caravan or something had, had a crash but they go here in the end.

My Auntie Sue and little Spencer

Megan and Little Spence

My mumsie, Me and auntie Sue

Jaydon being king of the castle

Little Spencer and Uncle John

My Nan and my dad :)

We went looking at wedding venues for my Sister Megan yesterday and we saw a really beautiful one that we all fell in love with but obviously to be more sensible they've got to view lots more venues before they actually pick one. The good thing is because they don't plan on getting married until 2016 they have time to really look around but there's part of me that really thinks the one we saw yesterday will be 'the' one :D. They don't want to get married in a church which I get and they would prefer that it was all in the same place. We did see a lovely hotel which I personally wouldn't mind staying in, because it was a nice hotel, but the bit where you would get married had the most horrid garish Orange carpet in the place where you would get married. Now I know you shouldn't decided on a place based only on a carpet but we were looking at previous weddings that had been held there and seriously NO matter what colour scheme you had there was NO getting around that carpet! We all liked the idea of having everything in one space so you didn't have to do any travelling to get to where you needed to be but it just wasn't the place. The place we loved you would have to stay somewhere the night before and travel there but it gives meggy and excuse to have a nice car :D.

Right guys I'll have more stuff going on soon as I have a day out with my older sister on Friday and Meggy and I have our Vampire Diaries convention soon too! I can't describe how excited I am for it!!! So more interesting blogs to come soon I promise.

I must figure out some stuff to do in my 3 months off as well. If any of you guys have any suggestions of things to do in England (preferably the midlands/south) thats not really expensive that would be awesome :).

I'm currently also trying to think of a giveaway for my 1 year Blogaversary as that is coming up in July and I would like to celebrate so if there is anything you guys think would be particularly good then let me know.

27.5.13

Well I have just been advised by an old friend that I should enter the cosmo blog awards. I've seen them around but didn't think I would have a chance of winning but I figure if I don't try then I wouldn't know and there's no harm in trying :].

I would love it if you would vote for me, but only do it if you want to, I figured it was worth a try as I do put my heart and soul into my blog and would love it if people felt they liked it enough to vote for me :].

23.5.13

So I was doing my drug change like I normally do and today was the day I change the little connector between the one line to the other. and all of a sudden it decides it wants to start flowing with blood. Now my line is not meant to have blood in it at all let alone be flowing with the stuff. So I acted quickly and put my finger over it to stop the blood while my dad got out a cap to put over it so I could then figure out what the hell to do. I firstly rang the Hammersmith numbers I have to try and get hold of my PH team but could I get hold of anyone? Obviously the universe has something against me and I couldn't get hold of anyone! I then rang my friend Kath to see if she had experienced anything like it, which she hadn't, then I opened it up to all PH people on Facebook whilst also dialling 999 so I could get to A&E.

At this point I was starting to worry because you need to be on the drug 24/7 and I wasn't sure if I should just attach the drug onto it or not. The problem is if I did that i risked the blood flowing into the rest of the line because I'm on quite a small dose the pressure coming from my body was probably higher than the pressure coming from the pump so I needed to reverse the pressure. So a paramedic turned up at my house and found out what was happening and spoke to a nurse from Hammersmith who we had managed to get through to she advise going to A&E and that from what she could tell from the information she had that it would probably just needed flushing with Saline.

So I got the blue light experience that I didn't get on Monday, I got a strange sense of pleasure out of it LOL. When I got to the hospital I was lucky enough to be seen by a doctor who had actually dealt with my type of line before and so felt confident that he knew what he was doing, although none of the nurses wanted to even go near it. He flushed it with Saline and because it went though totally fine and no blood came back up the line we think I may have not been screwing my connector thing on tight enough, therefore letting air into the line and when my blood pressure got to high because there was air it meant that the blood could come out. But I went without he drug for about 2 hours so I'm feeling a bit Urghhhh at the moment but I think after a good night sleep I will be fine. I have to ring Hammersmith tomorrow morning and they'll probably want me to pay them a visit very soon just to make sure the line isn't faulty in any way.

PLease ignore how horrid I look and overly large I look The hospital gowns are very unflattering and I didn't have it on properly lol

Hopefully I won't have any more stressful experiences but if life has taught me anything stuff tends to happen in 3's so lets hope not LOL

21.5.13

So as my wonderful friends, family and Facebook friends will already know last night I got a call, THE call and as you can obviously tell it didn't quite go to plan as I'm obviously writing this blogpost LOL. So here's the story...

At 10:44pm last night I got a call from a transplant guy at Papworth and this conversation consisted of me trying to breathe it kind of went like this

Transplant guy: "Hi Stacie this is blah blah from the Papworth transplant team"(cannot for the life of me remember this guys name)

Me: "Ummmmmm Hi!"

Transplant guy: "This is just a phone-call to let know that there's a chance there may be organs available for you but we need to ask you a question first"

Me: "Errrrr okay...." (trying not to hyperventilate at this point and trying to discretely wake my mum up by poking her leg)

Transplant guy: "The reason they are only potential is because this donor has a history of intravenous drug use... but we've done checks and they've been clean for 10 years and all the necessary blood tests have come back clear no HIV, no AIDS none of that, but on the form you sent back you said you didn't know if you would take organs from a previous drug user but we wanted to ring you and reassure you that all the necessary tests have and will be carried out before anything happens"

Now the reason I put 'Don't know' on the form is because I really didn't know what I would say if I was asked that question but at least now we do LOL.

Me: "Yeah! they have organs for me but the person has a history of drug use, do I take them?"

My mother was a bit befuddled at this point but I decided that I would take them plus it might not still happen anyway.

Me: "Okay, yeah!"

Transplant guy: "Okay Stacie, now please try to stay calm, don't eat or drink anything we still have some tests to carry out but we will ring you back in about an hour to let you know if we are going to send a car for you and if it's going ahead, make sure you are ready to go, okay?"

Me: "I really wish you had rung me like 10 mins before you did I just ate some rainbow drops LOL"

Transplant guy: "Well don't eat anything from now okay?"

Me: "OKAY! EEEEPPPP Excited!!!!"

At this point we ended the conversation and my parents started to run round like maniacs when I say parents I really mean my mother and me LOL.

It was actually quite a short hour for me because I was letting all the people I needed to what was happening because I have some nearest and dearest on my list of people to let know first and so a text messaging, Facebook messaging and Twitter Direst Messaging battle commenced LOL.

Then again at 5 past midnight my phone rang again with that blocked number and it was the transplant co-ordinator Tracy to tell me that so far so good the organs were a go and they were sending a car to me to come get me and take me to Papworth!

Now this drive was the slowest and longest drive of my entire life... I was really tired too so it was quiet journey too.

However as we got to the hospital they found out after more testing that the the lungs weren't good enough and that meant that the transplant couldn't go ahead but luckily for someone the heart was still viable! So some lucky person could have got their heart transplant this morning which is what is amazing about donors because they have the opportunity to save so many people :D.

When we got there they let us chill out get some food and a cup of tea because it was such a long drive and they didn't want to just see us on our way. I started to talk to Tracy and told her that I didn't believe it was going to happen until it happened anyway because I couldn't believe I even had a call because they very rarely do heart and lung transplants and my friend Anne had just had one like 10 days ago, then I talked about how she was actually here and how it was a shame that it was like 3am. She then said she would go check and see if she was awake and if she was she would let me go see her.

Luckily Anne was awake and I got to go have a chat with her! She is looking so unbelievably well and I can't actually believe she has just had a transplant because she was even walking to come see me which I was amazed by! We got to have a great chat for about 45 minutes and even though it didn't happen it was all worth it to see Anne, because I had really wanted to go see her ever since she had been allowed visitors.

Right now I'm okay still not sure what happened, it feels kind of like it was a dream but I'm pleased it happened because there was a part of me, as you all know, that was starting to worry that I had been forgotten about but the fact that I got a call tonight proves that I'm not. It's a little annoying that it didn't happen and I'm sure on one of my bad days I will be really angry that it didn't happen but as of right now I'm just pleased that I got to have a practise run and that I'm not lost in the shuffle somewhere :D

Once again thank-you to everyone who wished me well last night/this morning it's great to know that I have such an amazing support system behind me :D Lets all just hope the next call isn't 13 months away LOL Oooo and interesting fact the call actually happened on my 13 month Transplant list aversary :D

17.5.13

Well Today I have for you a Avon Haul! Now Avon is a much beloved brand of mine especially when it comes to bubble bath and nail varnish. Avon is actually probably one of the first places I ever brought make-up, through my mum of course and over the years I have just come to love certain things. Now when I moved from Lyneham to Swindon we lost our Avon Lady but luckily for me my friends Josh and Kerry decided to start doing the Avon thing.

They are doing it online so it's super easy to just order whatever it is that you want and then they send it to you. Also the price tag isn't half bad either. We all know that a lot of my make-up/beauty purchases can tend to be around £20+ an item mark but this haul has 11 items and only cost me a total of £35 which I think is AWESOME!

Righty Ho, so first off we have the 3 bubble-baths all of which were £2.50 each. I think these are a firstly a absolute bargain because they are massive so they last ages and smell UH-mazing! I have been using Avon Bubble-baths for years and when they went out of my life a good 2 years ago when we moved I missed them, I haven't found one that has been their equal. And we all know I love my bubble baths so I am so pleased they have re-entered my life. I find they are great for sensitive skin like mine because a lot of bubble-baths I have tried can be very drying on the skin but these really are great. Also have you ever brought a bubble bath and had the disappointment of no bubbles, well these my friends give loads bubbles and that just really pleases the little girl inside me :D.

Next off we have all the nail varnishes I brought, I went a bit nail crazy. At the moment I'm really into my nails, I go in and out of phases very easily but at the moment I'm focusing on my nails.

As a notorious biter of my nails for many years they are in awful shape. They just aren't very strong and when I do grow them they can just snap off/bend and layers can come off to. So in a attempt to be a bit more nail conscious I have purchased peeling and brittleness solver and a hydrate and grow dabber. So hopefully after some intense looking after my nails will be a bit better. I don't like to use fake nails just because they kind of feel weird and the one and only time I tried them, they made my ails worse.

Then we have the actual nail varnishes. I think my favourite is Decadence it's an intense deep pink colour which I love. I tend to suit the deeper richer colours and tend to wear them a lot more that frilly colours so I think all of the above will last me through the year.

Avon Nail varnishes have to be some of my favourite brand, I've been a loyal user since I was about 14 and I find that with the deeper colours they generally only need one coat and they don't tend to chip within the first few days in my experience, so certainly something that I would recommend.

ANEW Youth-Awakening lipstick in the colour Plumberry £6.50

Here we have a very spur of the moment purchase which I'm actually really pleased I made. I've been wearing it for a good 6 hours and it is holding it's own. I tend to sway more towards reds/orange/plum colours. They tend to work for me with my dark hair and dark eyes. This lipstick is really great so far, it's really moisturising and seems to be fading evenly which is something I really love to find in a lipstick. Don't you hate it when it comes off in the middle and the edges look like some hideous lip liner. Well not with this lipstick :D.

I can't really say if it's 'Youth-Awakening' because I'm only 22 but I would assume the moisturising aspect of the lipstick would probably be great on older lips and the colour is a little darker than a natural lip colour and is really flattering!

Swatch of Plumberry.

* * * * * *

So guys there are my AVON purchases. If you guys are in the UK and are interested in buying anything it's really simple and easy to use and great value for money so please pop on over to their Facebook Page and/or there website and check out their stuff. AVON is and has always been a brand that I highly recommend.

10.5.13

Well this morning I had the delight of waking up to the news that My friend Anne had her Call for her heart and lungs last night. How amazing is that?! She had been waiting since October and I know she had been having a rough time as of late as she had just been put on Flolan as well and she was just in and out of hospital a lot, so I definitely think it came at the right time for her. The last we heard the surgeons said it went well and seem really pleased and her Brother will be updating us all as and when he can.

It's one of those moments where I'm really overjoyed that my friend has got their call and I really couldn't be happier for her because everyone on the list needs their organs, but at the same time I'm a little deflated because I'm always wondering "when will it be my turn?" Although to be honest I have a few friends that have been waiting a lot longer and I would prefer they got their calls before me because that would make me feel really guilty if I got my call before some who has been waiting a lot longer than me. Stupid logic really but unfortunately my emotions are a tad unpredictable LOL.

The problem is being Blood type O it just means I'm going to have to be patient and wait it could potentially be years, the question is will I last long enough? I know people who are blood group O and really, really need them organs at least I'm still plodding along some people aren't and there're just isn't enough people signed up or talking to their families. O is the commonest blood group therefore essentially it should be the one with the most organs available. That just isn't the case though. I think it's probably has something to do with people maybe being complacent about it like they'll think, "Oh I'm a common blood type I'm sure there's already loads of people donating" or "I'm sure my family will donate if anything happened to me" without actually physically talking to their families.

Theres part of me that gets all that, why would you even think about it if you didn't have to? But I just wish we lived in a world where it wasn't even a question. My point is I suppose if you ask anyone on the street if they were in the position where they needed a organ would they take one? Almost everybody would say yes. You'd get a few who would probably say no but I wouldn't believe that until they were actually in that position. It's easy to say no when you aren't actually dying. But surely if almost everyone would say yes if they needed a organ why is it that only around 31% donate? It's actually mind boggling to me.

So today when I get some wonderful news, it's a day of mixed emotions where many different thoughts run through my mind most of which question the morality of us human beings and why we watch people die and wither away when there's actually a lot that we could do to stop it. I suppose the same could be said about hunger and all that stuff but maybe thats a little too deep to go into.

If you haven't, it would mean the absolute world to me if you would sign up to the donor register and if you do tell your family too JOIN THE DONOR REGISTER

6.5.13

Well I think the main reason I'm writing this today is because I'm slightly miffed (The only word that sort of springs to mind LOL). Since I came out of hospital I've been feeling semi-normal. I still can't just stride down a street, walk up some stairs etc. etc. but I have been finding it easier to just breathe. Something very simple that most people take for granted, and why shouldn't they it's something that everybody should be able to just do. Before I went into hospital I was finding just breathing a laborious task and was dreading the days where I would have to take off my oxygen to leave the house and just generally dreading having to do anything that would make that very simple task of breathing just a little bit harder.

Now I've heard miracle stories when it comes to Flolan and I've heard some not so great stories because of it. I think I'm somewhere in the middle. I haven't had some great big bounce back of energy and ability, but that very simple task of breathing did become easier, I wasn't needing to go on my oxygen so much if at all, one very simple thing that I was very grateful for. Now the reason that I am slightly miffed is that, this seems to have taken a slide over the weekend. My chest has begun to hurt again and I'm currently sat on my oxygen, I think I was beginning to take it for granted again and it made me feel a little bit normal even though I have this thing coming out of my chest. I've never been one to be bothered by what people think of me so if people stare and find it odd thats their problem not mine. But my body seemed to want to remind me today and this weekend that I'm not normal and if I want to do normal things like hang out with my friends I must suffer the consequences later.

I think because I was having such a good 2 weeks I thought "oh this might continue" but noooo boy was I wrong. I must always remember that my condition is unexpected, unpredictable & unreliable the day you need/want a good day will be the day you're body bites you in arse and says "No, no, no, no you're ill remember?"

I just had Unrealistic expectations, I should have realised when the migraines started. I'm still optimistic though that it'll continue to improve my quality of life as the dose increases. My doctors seem to think it could be a while before I start seeing any real affects, only having migraines as a side affect is bad in a sense because they would like to see some other form of side affect to know that it is really working. Although side-affects are bad, they are also good in a sense because they tell the doctors that although yes you're feeling some minor bad thing from it, it shows that you're body is reacting to the drug and they like that confirmation. Although I can't say I'm not happy that I don't have any really noticeable side-affects from it LOL.

In other completely unrelated news because I'm unpredictable like that ;) I wanted to tell you guys about a TV series that I'm absolutely hooked on. It's called 'Criminal Minds'. Now I have been watching criminal minds on and off for years in between other crime shows like CSI New York and NCIS etc. etc. but there was never a moment where I would schedule in that hour of my day to watch it on tv, until now that is. I had run out of TV series to watch and I just wanted to watch something new and all my other TV series' are coming to their ends so whilst flicking channels last week, I think, I landed on Sky Living where I engaged in 3 episodes straight of the rather addicting programme. Now if you know me then you'll know I hate to watch gory and gross horror/thriller movies because one I'm just not one of those people that find thats kind of stuff thrilling or exhilarating or in anyway entertaining at all. Secondly I think it gives the psychopaths of this earth Ideas, why give those kind of people a head start? right?

Now although it does have an aspect of that type of thing, the thing I really like about it is the solving of the crime part not the pyscho who goes on a murderous rampage part. I like getting to know the characters and the stories behind why they came to the BAU (Behavioural Analysis Unit) and I assume they use accurate data when they pick through why these people do what they do and I find that aspect of it interesting. Sometimes I have to flick through the gross part because really at heart I'm a 5 year old little girl who really doesn't need to be seeing someone get slashed across the throat or stabbed in the gut, if you know what I mean?

But anyway guys thats it from me, I just sort of needed a little rant, I'm not disheartened though I just have to remind myself not to expect unrealistic expectations from now on and I will always have bad days and I shouldn't be disheartened when they happen :)

4.5.13

Well I'm sorry I've been a bit MIA for a while and I will be for a little while. I have a uni essay due in next week so this weekend and week will be spent doing that.

The Flolan is going well, I've upped my dose twice more since hospital, the only side affect I'm having at the moment is really awful migraines but I get headaches from my Sildenifil and Bosentan so I assume the Flolan is just making those worse Nothing I can't handle though, although it did stop me going to work this morning because I couldn't even stand the light.

I went to Hammersmith yesterday, and to be honest it was the most boring day ever. If I had been having issues with the Flolan then it would have been beneficial in some way but because I haven't had any issues, it was just a day of waiting for doctors to come and speak to me. I also had the stitch removed from the main site area, that was a bit of hassle because where they didn't change my dressing soon enough the week they put it in, blood had sort of encrusted in the stitch and they had to wind it around the line a little, so the nurse doing it had a bit of a tough time trying to get it off without nicking the line. But after 20 minutes of careful picking she managed it :).It looks a lot better now and the bruising is definitely going down too :D.

I also thought I would show you some things I got in the post today. The little pouch that you get given for the pump is a standard grey thing that they obviously choose because it goes with male and female and they can whack it out in batches but to be perfectly honest it is so ugly and I really hate, okay not hate but dislike it. So I decided to buy a Joey Pouch. Now Joey pouch is company that was created by a guy called Dan Male who had Pulmonary Hypertension like me. He also had a pump and didn't like the pouches that came with the pumps and decided to make one for himself. He then decided to expand because there are a lot of other PH patients who feel the same way and he also decided to expand into other pump ranges etc. Here's the link if you want to check out his whole story and the other ranges that they do click here. Unfortunately Dan passed away but his legacy still lives on through Joey Pouch.

Here is the stuff you get initially when you get your pump:-

Waistband, grey pouch and lanyard

Now here's what I brought from Joey Pouch:-

^^^ Here's a flowery one that I really love it's actually pinker in real life but I may have had my flash on too bright :-/ LOL, it' actually slimmer than the grey one and it's something that I don't mind people seeing, if that makes any sense?

Here we have corduroy black material and it has little pink flowers on it, which I love :D, I like the fact that it is plainish with little details on it, it'll be good for work and it'll pretty much go with all my clothes :D. I also brought a back waistband as well although I will probably continue to use my white waistband as well and I'm going to try and find more lanyards as well :).

I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.

This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.